2016 NMO Information Day
20/21st May 2016 Aston Conference Birmingham
For all those who, unfortunately, were unable to attend this year’s Information Day we have to say that you missed, probably, the best so far. This is thanks in no short measure to the hours upon hours of hard work and planning put in by all those involved – with special thanks going to Annaliza Rye (The John Radcliffe Centre, Oxford) and Jackie Thomas (The Walton Centre, Liverpool). I’m sure everyone would like to add their sincere THANK YOUs for a job really well done.
Annaliza Rye Jackie Thomas
We held our charity’s Annual General Meeting at the Information Day and although it was not concluded, owing to time restraints, we did manage to put in place a strategy for our future plans and development. Although all concerned fully understand that we have a long and somewhat difficult road ahead of us, great strides forward were made.
As a result of the trustees inviting certain individuals to come on board in a more official capacity, we are proud to announce that Dr Anu Jacob (Walton) and Dr Jackie Palace (Oxford) have consented to become the Patrons of NMO Spectrum UK. The work of the trustees and appointed agents to guarantee the maximum effort in pursuit of our joint aims and goals will be bolstered through their valuable input.
Dr Anu Jacob Dr Jackie Palace
Without doubt, both individually and as a part of our ever-growing team, all of the above will be worth their weight in gold as we strive to raise both awareness and funds to fight NMO Spectrum Disorders.
Elected Ambassador to the North West
Elected Ambassador to the South East
Elected Ambassador to the Midlands.
Elected Ambassador to Greater London.
Jane Cooper
Elected Ambassador to Staffordshire
Elected Paediatric Ambassador UK
Without doubt, both individually and as a part of our ever-growing team, all of the above will be worth their weight in gold as we strive to raise both awareness and funds to fight NMO Spectrum Disorders. It is of paramount importance that we, as a charity, recognise the achievements of our fundraisers. Without them we just could not continue in our efforts to make misdiagnosis of NMO a thing of the past, and to have its symptoms recognised by the majority of the medical profession. This, however, is only one of the aims we have set ourselves as we haven’t lost sight of the fact that, eventually, it’s the cure we are after – and we never will!
Giving that recognition has now become a regular feature at our Conference and Information Day, as NMO Spectrum UK and NMO-UK The Rare Illness Research Foundation CIC take great pride in recognising these contributions by holding our annual Awards Ceremony.
Unfortunately, this year’s recipients were in the main, either off climbing Mount Everest with one hand tied behind their backs for a worthy cause, or sunning themselves on a well-deserved holiday. It was fortunate that we had some worthy stand-ins to accept the awards on their behalf.
The first award for NMO Fundraiser of the Year went Mr Kevin Beadell who took on numerous challenges, including a 174-mile bike ride, marathons, a half marathon and a children’s fun mile, to raise a staggering figure in memory of his late father, Terry, who lost his battle against NMO in December 2013. Kevin’s award was received on his behalf by last year’s Fundraiser of the Year, Mr John S Loydon. John was away in Canada at the time of last year’s ceremony, so it seemed fitting that John would receive the award on Kevin’s behalf. A big ‘thank you’ to John and very special NMO ‘congratulations’ to Kevin, who has now received his award. He sends his thanks to everyone involved with our charity. The thanks belong to Kevin and to his team for their fantastic efforts on our behalf.
The next award goes to a young gentleman who is no stranger to our News and Events page for his unbelievable endurance event when, after being inspired by Tia-Grace Ray, Mr John Kane took on The Nuclear Oblivion Assault Course, comprising 26 miles of pain over 175 Army Standard obstacles, which he began at 9 in the morning, and he crossed the finish line at 5 in the afternoon When asked why he put himself through such torture he gave a simple yet profound answer: “Because Tia-Grace was waiting for me at the finish line.” John Kane is not only Tia-Grace’s hero, but will go down in our Charity’s history as one of ours too. Congratulations, John!
As John was away supporting one of his many worthy causes, who better to receive the award on his behalf, than Sandie, Tia-Grace’s mother? She is a stalwart in our continuing battle against this terrible disease.
Our final award for Fundraiser of the Year took us back, more or less, to the beginning. The experience gained at JSL’s 2015 Blues Gig, and the months of non-stop work that a certain young lady put into arranging our NMO Spectrum UK Summer Ball at Thame in Oxfordshire, helped us, as an organisation, to gain the most valuable lessons in event co-ordination. Each event raised a substantial sum, giving us extra confidence and the financial support needed to put the wheels in motion for future events. The young lady in question, our very own Annabelle Moult, was on a well-deserved holiday with her husband, Danny. Truly, we hope Annabelle got the relaxation she deserved as it’s now all hands to the pump, planning our main event for 2016, the NMO Spectrum UK Halloween Masquerade Ball at The Oxford Belfry on Saturday 29th October 2016. Details will be released via Facebook and our News and Events page very soon. As Annabelle could not accept her award in person it gave us the opportunity to introduce one of our new additions to the team: Mr Everis Pellius, who has taken on the role of Ambassador. It is fitting that Everis should have received the award on Annabelle’s behalf, as he has kindly offered to be our star act at Annabelle’s main event and to perform for us free of charge. This is as well as donating all of the profits from his recently released EEP, ‘Love and Affection’ directly to NMO Spectrum UK. The EEP is available from our on-line shop.
There are times in life when you have to sit up and take notice of the work that goes on behind the scenes by those who give up their time on a voluntary basis. In our opinion this year’s recipient of the NMO Spectrum UK Order of Merit 2016 has done all of that and more. There isn’t a Neuro Consultant in the UK now that isn’t aware of NMO Spectrum Disorder as a condition, thanks to the hundreds of information packs sent out by our Press and Public Relations Officer, Mr Robert Hunt. Happily, Robert was in attendance to receive his award as we all gave our heartfelt thanks to him for all of his efforts on our behalf. Robert received his award presented by Mrs Patricia Hughes McCann, the founder and CEO of NMO Spectrum UK.
Our final award generated a very emotional response and took its recipient completely by surprise. The award of Young Inspirational Star 2016, went to a young lady who, to be honest, inspires everyone she meets, including myself and Trish. We spent much of the Information Day being entertained by this beautiful young lady. She was the inspiration behind last year’s winner, Miss Lucy Moore, John Kane’s titanic event, and the support of stars such as Peter Andre. Every single person who meets Tia-Grace falls instantly in love with her and wants to know about the condition that affects her,while also wanting to get involved in the fight against NMO. She is truly inspiring: Miss Tia-Grace Ray. “CONGRATULATIONS” to our Inspirational Young Star of 2016.
Undoubtedly, for many reasons, this year’s Information Day will live long in the memory. The presentations made by all involved at both Oxford and Walton, showed the planning, execution and the feeling of real progress being made by our medical teams and left the overwhelming majority with the feeling of Hope.
Hope is what we have. And we hope to see you all at next year’s Patient Conference and Information Day.
Kindest regards Tony Hughes McCann.
CEO, NMO-UK Rare Illness Research Foundation CIC.
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